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Health

Better End of Life Project

Aims

To understand the outcomes and experiences of people affected by death, dying, and bereavement in the UK by generating, retrieving, and synthesising evidence, and to frame this evidence in a format that compels policy-makers to take action. 

Methods

This project has three workstreams which include, a cross-sectional survey of bereaved relatives and carers in the UK, mapping available care and services to identify inequalities and gaps and analysis of routinely collected data.

Project Team

Stephen Barclay

Research Project Co-Investigator

Anna Bone

Lecturer in Epidemiology and Palliative Care

Rachel  Chambers

Cicely Saunders International PhD Training Fellow

Irene Higginson

Director of Better Health & Care Hub

Therese  Johansson

Post-doctoral research associate

Fliss Murtagh

Professor of Palliative Care (Visiting)

Effective start/end date: 01/01/2021 - 31/12/2023

Workstream 1: We want to know what is the quality of care and support experienced by individuals affected by death, dying and bereavement in the UK? We will generate new data through a large survey of bereaved relatives and carers. We want to understand patients’ symptoms and concerns in the last weeks of life, including pain, breathlessness, and anxiety. We will also explore carers’ grief intensity. 

Workstream 2: We want to know what care and services are available, and which are most effective? We will map the availability of care and services to identify gaps and inequalities. We will review and summarise evidence to identify the most effective ways to deliver services. 

Workstream 3: We will measure the quality of death, dying, and bereavement care, using metrics developed nationally, to understand the quality of care for populations, and understand differences between regions. 

Publications

Johansson T, Pask S, Goodrich J, Budd L, Okamoto I, Kumar R, Laidlaw L, Ghiglieri C, Woodhead A, Chambers RL, Davies JM, Bone AE, Higginson IJ, Barclay S, Murtagh FEM, Sleeman KE (King’s College London, Cicely Saunders Institute; Hull York Medical School at the University of Hull; and University of Cambridge, UK).Time to care: Findings from a nationallyrepresentative survey of experiencesat the end of life in England and Wales.Research report. London (UK): Marie Curie. (September 2024) https://mariecurie.org.uk/policy/better-end-life-report https://www.mariecurie.org.uk/policy/better-end-life-report 

Johansson, T., Chambers, R. L., Curtis, T., Pask, S., Greenley, S., Brittain, M., Bone, A. E., Laidlaw, L., Okamoto, I., Barclay, S., Higginson, I. J., Murtagh, F. E. M., & Sleeman, K. E. (2024). The effectiveness of out-of-hours palliative care telephone advice lines: A rapid systematic review. Palliat Med, 0(0), 02692163241248544. https://doi.org/10.1177/02692163241248544 

Pask, S., Omoruyi, A., Mohamed, A., Chambers, R. L., McFarlane, P. G., Johansson, T., Kumar, R., Woodhead, A., Okamoto, I., Barclay, S., Higginson, I. J., Sleeman, K. E., & Murtagh, F. E. (2024). Telephone advice lines for adults with advanced illness and their family carers: a qualitative analysis and novel practical framework. Palliative Medicine, 38(5), 555-571. https://doi.org/10.1177/02692163241242329 

Chambers RL, Pask S, Higginson IJ, Barclay S, Murtagh FE & Sleeman KE. (2022). Inclusion of palliative and end of life care in health strategies aimed at integrated care: a documentary analysis. AMRC Open Research4(19), 19. https://healthopenresearch.org/articles/4-19

Sleeman, K. E., Cripps, R. L., Murtagh, F. E., Oluyase, A. O., Hocaoglu, M. B., Maddocks, M., Walshe, C., Preston, N., Dunleavy, L., Bradshaw, A., Bajwah, S., Higginson, I. J. & Fraser, L. K. (2021). Change in Activity of Palliative Care Services during the Covid-19 Pandemic: A Multinational Survey (CovPall). Journal of Palliative Medicine. https://www.liebertpub.com/doi/10.1089/jpm.2021.0315

O’Donnell, S.B., Bone, A.E., Finucane, A.M., McAleese, J., Higginson, I.J., Barclay, S., Sleeman K.E. & Murtagh, F.E.M. (2021). Changes in mortality patterns and place of death during the COVID-19 pandemic: a descriptive analysis of mortality data across four nations. Palliative medicine 35 (10), 1975-1984. https://journals.sagepub.com/doi/pdf/10.1177/02692163211040981

The publication feed is not currently available.

Project Team

Stephen Barclay

Research Project Co-Investigator

Anna Bone

Lecturer in Epidemiology and Palliative Care

Rachel  Chambers

Cicely Saunders International PhD Training Fellow

Irene Higginson

Director of Better Health & Care Hub

Therese  Johansson

Post-doctoral research associate

Fliss Murtagh

Professor of Palliative Care (Visiting)

Effective start/end date: 01/01/2021 - 31/12/2023

Workstream 1: We want to know what is the quality of care and support experienced by individuals affected by death, dying and bereavement in the UK? We will generate new data through a large survey of bereaved relatives and carers. We want to understand patients’ symptoms and concerns in the last weeks of life, including pain, breathlessness, and anxiety. We will also explore carers’ grief intensity. 

Workstream 2: We want to know what care and services are available, and which are most effective? We will map the availability of care and services to identify gaps and inequalities. We will review and summarise evidence to identify the most effective ways to deliver services. 

Workstream 3: We will measure the quality of death, dying, and bereavement care, using metrics developed nationally, to understand the quality of care for populations, and understand differences between regions. 

Publications

Johansson T, Pask S, Goodrich J, Budd L, Okamoto I, Kumar R, Laidlaw L, Ghiglieri C, Woodhead A, Chambers RL, Davies JM, Bone AE, Higginson IJ, Barclay S, Murtagh FEM, Sleeman KE (King’s College London, Cicely Saunders Institute; Hull York Medical School at the University of Hull; and University of Cambridge, UK).Time to care: Findings from a nationallyrepresentative survey of experiencesat the end of life in England and Wales.Research report. London (UK): Marie Curie. (September 2024) https://mariecurie.org.uk/policy/better-end-life-report https://www.mariecurie.org.uk/policy/better-end-life-report 

Johansson, T., Chambers, R. L., Curtis, T., Pask, S., Greenley, S., Brittain, M., Bone, A. E., Laidlaw, L., Okamoto, I., Barclay, S., Higginson, I. J., Murtagh, F. E. M., & Sleeman, K. E. (2024). The effectiveness of out-of-hours palliative care telephone advice lines: A rapid systematic review. Palliat Med, 0(0), 02692163241248544. https://doi.org/10.1177/02692163241248544 

Pask, S., Omoruyi, A., Mohamed, A., Chambers, R. L., McFarlane, P. G., Johansson, T., Kumar, R., Woodhead, A., Okamoto, I., Barclay, S., Higginson, I. J., Sleeman, K. E., & Murtagh, F. E. (2024). Telephone advice lines for adults with advanced illness and their family carers: a qualitative analysis and novel practical framework. Palliative Medicine, 38(5), 555-571. https://doi.org/10.1177/02692163241242329 

Chambers RL, Pask S, Higginson IJ, Barclay S, Murtagh FE & Sleeman KE. (2022). Inclusion of palliative and end of life care in health strategies aimed at integrated care: a documentary analysis. AMRC Open Research4(19), 19. https://healthopenresearch.org/articles/4-19

Sleeman, K. E., Cripps, R. L., Murtagh, F. E., Oluyase, A. O., Hocaoglu, M. B., Maddocks, M., Walshe, C., Preston, N., Dunleavy, L., Bradshaw, A., Bajwah, S., Higginson, I. J. & Fraser, L. K. (2021). Change in Activity of Palliative Care Services during the Covid-19 Pandemic: A Multinational Survey (CovPall). Journal of Palliative Medicine. https://www.liebertpub.com/doi/10.1089/jpm.2021.0315

O’Donnell, S.B., Bone, A.E., Finucane, A.M., McAleese, J., Higginson, I.J., Barclay, S., Sleeman K.E. & Murtagh, F.E.M. (2021). Changes in mortality patterns and place of death during the COVID-19 pandemic: a descriptive analysis of mortality data across four nations. Palliative medicine 35 (10), 1975-1984. https://journals.sagepub.com/doi/pdf/10.1177/02692163211040981

The publication feed is not currently available.

Our Partners

University of Cambridge

University of Cambridge

Hull York Medical School (University of Hull)

Project status: Ongoing

Principal Investigator

Investigator

Funding

Funding Body: Marie Curie

Amount: £620,953.86

Period: January 2021 - December 2023

Keywords

DEATHDYINGBEREAVEMENTPALLIATIVE CAREEND OF LIFE CARECOVID-19CARE HOMESPRIMARY CARE